But you gotta wonder if they will be wearing noise reduction headsets and ear plugs…or not…when it comes to the scandal of synthetic T4-only medications.  Will they?

Just today, the U.S. Department of Health and Human Services and the Food and Drug Administration (FDA) announced the Safe Use Initiative, “a program aimed at reducing the likelihood of preventable harm from medication use”.

Statements I gleaned from this initiative include:

1. Today, tens of millions of people in the United States depend on prescription and over‐the‐counter (OTC) medications to sustain their health—as many as 3 billion prescriptions are written annually. Too many people, however, suffer unnecessary injuries, even death, as a result of preventable medication errors or misuse.

2. Although FDA and many other stakeholders have been working to improve how the healthcare system manages medication risks in the United States, it is widely recognized that more needs to be done to protect the public from preventable harm from medication use.

3. Medications offer great benefit, but they come with risks. Whenever medications are not used optimally, risks of harm can increase significantly.

4. FDA proposes to identify, using a transparent and collaborative process, specific candidate cases (e.g., drugs, drug classes, and/or therapeutic situations) that are associated with significant amounts of preventable harm.

This initiative is actually far broader than what I gleaned above, and also involves self-abuse, exposure of dangerous medications to children, dire side effects, and more. Five areas are also specifically targeted:  Consumer medication information (CMI), Medication dosing devices, Acetaminophen toxicity, Alcohol-based surgical preps, and Medications in vials. You can read more in the fact sheet.

But if the FDA is going to do their job with this initiative, or do their job overall, you have to wonder if they will listen to and include the problems associated with being treated with a T4-only medication as experienced by millions of patients worldwide. Continuing symptoms of hypothyroidism while on this inadequate treatment is widespread and damaging for many, causing hands reaching deep in pockets to pay for numerous doctors appointments, besides antidepressants, anti-anxiety meds, blood pressure meds, statins, cortisol meds for adrenal fatigue, and other medications which we would have never needed, and would have been preventable, if we had been on natural desiccated thyroid like Naturethroid or Westhroid in the first place.

Many patients on thyroxine, T4-only medications will also report actual hospital visits due to the side effects of a poor treatment.

In other words, thyroxine aka levothyroxine aka T4 treatment has been an unsafe and harmful treatment, causing millions to suffer unnecessary injuries and side effects for over 50 years of its useless and popular use.  It fits the Safe Use Initiative. Or at the very least, it calls for the FDA to listen to patient experience with this lousy choice to treat hypothyroidism.

Listen to us, FDA. Listen and be wise.

P.S. See the blog post below about a genetic reason why so many do lousy on T4.

*Want to be infor­med of these ‘fringe web­site’ blog posts?  Curious what’s on radi­cal Janie’s mind? Just use the Noti­fi­ca­tions on the left below the links.

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales!

* Pre­fer STTM in book form with more detail? You can read about it here.

*Need options for thy­roid treat­ment during the current shor­ta­ges due to demand being grea­ter than supply? Go here.

I once cracked open an egg to find it had TWO shells.  And that oddity is equivalent to finding an Endocrinologist who supports the use of natural desiccated thyroid. 

Voila!! ~~ you can listen and talk to an Endo who does just that on this Thursday evening’s popular THYROID PATIENT COMMUNITY CALL on TalkShoe.

His name is Dr. Gary Pepper, Board Certified by the American Boards of Internal Medicine, and Endocrinology and Metabolism and editor-in-chief of metabolism.com.  Besides serving many years in distinguished leadership positions, he was selected as one of the top 100 physicians in New York City by New York Magazine and is also a featured expert with CNBC and ivillage on topics of diabetes and endocrinology. He states:  Almost daily I reread the words of Sir William Osler: “It’s often more important to know what sort of person this disease has than to know what disease the person has.”

i.e. this is one of a rare but growing breed of doctors who supports what we as thyroid patients already know–that desiccated thyroid is a five-star hypothyroid treatment and T4-only is about as effective as a doughnut diet for most. And lo and behold,  Dr. Pepper is an Endocrinologist! Of course, I can give no guarantees how he is as a doctor in his own office, but I do appreciate his understanding that T4-only treatment may not be the best way to treat hypo.

Join us this Thursday evening, 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern by clicking on the first link above titled Thyroid Patient Community Call.  When on that page, you’ll also see the exact day and time left before the call. You’ll be able to listen to the call right on your computer, or you can dial in and listen on your phone. There is also an option to talk one-on-one live with Dr. Pepper and Janie.

And remember: neither I or Dr. Pepper can offer personal medical advice or provide individual specific counseling. Those are between you and your personal physician.

***P.S.  PharmaTimes this month reported that this quarter’s sales of  Synthroid (levothyroxine) were up 3.7% to $134 million by Abbott Labs. Sad for most of those patients. If you know of someone who has been put on a T4 med, send them here: www.stopthethyroidmadness.com/t4-only-meds-dont-work or to the audio page here: www.stopthethyroidmadness.com/audio-shorts (third one down).

*Want to be infor­med of these ‘fringe web­site’ blog posts?  Curious what’s on radi­cal Janie’s mind? Just use the Noti­fi­ca­tions on the left below the links.

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales!

* Pre­fer STTM in book form with more detail? You can read about it here.

*Need options for thy­roid treat­ment during the current shor­ta­ges due to demand being grea­ter than supply? Go here.

I confess that I hated my Chemistry class in high school, even if Mr. Bowen tried to make it interesting and favored the girls over the boys in class.  But lo and behold, one of those elements on the Periodic Table ended up having a significant role in all or our lives as thyroid patients: iodine.

Iodine can be found in every inch your body, but is especially prevalent in your thyroid, which makes it an interesting element for those of us with thyroid disease.  The active thyroid hormone T3 (triiodothyronine) is made up of three iodine molecules, and the storage hormone T4 (thyroxine) has four iodine molecules. In fact, without proper amounts of iodine, your thyroid wouldn’t even function well.

An optimal amount of iodine has also been shown to improve breast health, provide cancer protection, remove toxins like Bromide, fluoride, mercury etc…and in some cases, has helped thyroid patients either lower their dose, or even get off thyroid treatment. Thyroid patient Diana tells of getting off thyroid treatment due to iodine on the Stories of Others page.

***This Thursday evening on the Thyroid Patient Community Call on TalkShoe, we’ll have guest Stephanie Buist, owner of the Yahoo group Iodine and a 9-year thyroid cancer survivor who strongly feels iodine has been a huge factor.   We’ll explore how much iodine a person needs, the loading loading test, the best sources of iodine supplementation, whether you need iodine, as well as controversies with iodine use, including Hashimotos disease or bad reactions.  Times for the call are 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern. You can listen right on your computer, or call to talk directly to Stephanie and Janie. Join us!

*******************

Sheila Turner of TPA-UK  (Thyroid Patient Advocacy-UK www.tpa-uk.org.uk) is starting the ball rolling on something very interesting:  they have contacted a lab in the UK who will do a qualitative analysis of the old Armour vs. the new reformulated Armour to get a breakdown of the ingredients, and potentially give us an idea WHAT is causing thyroid patients to have a return of their hypothyroid symptoms since Forest reformulated Armour in 2009.

However, says Sheila, this will cost in the region of £600 to £700 (approximately $1100).  Says Sheila, “If there are enough patients who are willing and able to help raise the funding required by giving whatever we can afford, we could finally get the answer as to which changes have been made in the new formula and whether this includes changes in the active (as some have suggested) and the inactive ingredients and put this baby to rest once and for all.”

You can contact Sheila at the above website and make a pledge.  As I write this, they have already have £100 pledged.

UPDATE: Stephanie above has agree to be the ‘Pledge and Money Collector’ for the lab work needed to analyze the old vs new Armour . She can be contacted at ladybugsandbees@sbcglobal.net

*Want to be infor­med of these ‘fringe web­site’ blog posts?   Curious what’s on radi­cal Janie’s mind? Just use the Noti­fi­ca­tions on the left below the links.

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales!

* Pre­fer STTM in book form with more detail? You can read about it here.

*Need options for thyroid treatment during the current shortages. Go here.

Just when you think we’re full of great information for better thyroid care, there’s still more to learn and find out.  Below is information that you might find interesting on STTM.

ADRENALS: For those who discovered via the 24 adrenal saliva test that they needed cortisol support, we have come to realize that some can’t do the ramping up schedule from a small amount to a larger amount without having problems from the feedback loop.

Instead, many simply need to “start” on the higher amount, which would range from 20-30 mg. You can read about that on the How to Treat page, and you’ll note that not one morning amount goes higher than 10 mgs.  With the exception of men, higher than 10 mg seems to suppress the ACTH and adrenals too much.

A NEW LOOK: To make the STTM home page more understandable to newcomers, the home page has broken down the information better into separate pages, and also has a new interesting way of using it.

LISTEN TO THIS INFORMATION: STTM has short audio clips you can listen to, or send someone else to, to help understand what this is all about.

STORIES OF OTHERS: Individual real-life stories continue to come in, proving over and over that this revolution for far better care really does work.

FEEDBACK and MORE FEEDBACK: I get emails daily about lives changed thanks to this patient revolution. It’s wonderful to see people finding out WHY they have depression, less stamina than others, rising cholesterol and blood pressure, hair loss plus other lingering symptoms of  hypothyroidism left untreated because of the lousy TSH, or undertreated because of the equally-lousy T4-only treatment like Synthroid. I can’t begin to post them all, but STTM does contain a sampling of this feedback.

DESICCATED THYROID BRANDS: Wow, the list is growing for desiccated thyroid brands around the world! We now have listings for Denmark, Germany, Italy and New Zealand, as well as more detailed information on compounded thyroid in Australia. Thanks to all who contributed.

KEEPING UP WITH ADDITIONS TO STTM: In case you didn’t know, there’s a page meant to inform you of what’s added to STTM. I may neglect to list a few additions occasionally, but think I’m pretty close to getting most of them up there.

MEDICAL RESEARCH TO PROVE WHAT WE ALREADY KNOW: Did you know that STTM has a page which compiles research and studies which prove what we as patients already know? It’s not loaded with research yet, but it’s growing. And if you have found more to contribute to that page, use the Contact Me form.

SITE MAP: And bottom line, you can always go to the Site Map, or review the information more compactly in the book, which patients are taking into their doctors offices.

*Want to be informed of these blog posts? Curious what’s on Janie’s mind? Use the Notifications on the left at the bottom of the links.

*Stop the Thyroid Madness T-shirts are now 50% off! I like sales, don’t you? And by wearing these shirts, you’ll never know what seed you put in the mind of someone walking past you who’s still on Synthroid or any other T4 meds, and doesn’t know WHY they have depression, rising cholesterol, easy weight gain, the need for naps, etc. You”ll also find humorous bumper stickers which definitely spread the word.

Armour desiccated thyroid by Forest Pharmaceuticals used to be easy to do sublingually, even if the official line was they didn’t make it that way.

And patients liked that sublingual ability with Armour.  It allowed them to work around the problem of swallowing desiccated thyroid several hours from having swallowed iron, estrogen or calcium–all which can bind some of the thyroid hormones in your stomach.

It also helped those with digestive issues, gluten intolerance or Celiac (a common problem for some hypothyroid patients) by bypassing the stomach.

But with the newly formulated Armour in 2009, it became difficult. The pill is harder with less dextrose and more cellulose.  It now fell into the ranks of all other desiccated thyroid pills, including Naturethroid and other good brands, as a more dense tablet.

But no matter what brand you use (especially the growing group of patients who are having their doctors switch them to Naturethroid), below are tips from patients on how to continue doing your desiccated thyroid sublingually. Let your doc know, too.

1) Try adding a touch of the contents of a Pixie Stix under your tongue. It’s flavored sugar in a straw, and the sugar seems to help the tablet dissolve sublingually through tissues under the tongue.

2) If you are using sublingual B12 lonzenges to treat low B12, try adding it under the tongue with your desiccated thyroid. The action of the sublingual lozenge seems to move over to the thyroid tablet.

3) Swish warm water in your mouth before you place the tablet under your tongue.

4) Crunch up the desiccated thyroid tablet before any of the above and before placing it all under your tongue.

Also note that you can swallow your desiccated thyroid. You’ll just have to make sure you don’t also have a stomach full of iron rich foods or calcium, or estrogen. Generally, it’s best to take your tablet 4 hours from any of the former. P.S. See comments below on the newly formulated Armour, and farther down, a post on Naturethroid.

*Have more sublingual ideas or experiences? Share it in the Comments section.

*Want to be informed of my blog posts? Curious what’s on my mind? Just use the Notifications to the bottom left of the links.

I had been wondering what the heck was going on with thyroid patients in the UK after the Royal College of Physicians (RCP) came out with their dim-witted, cuckoo’s- nest February 6th guideline stating that 1) thyroxine was the only medication needed for hypothyroidism, 2) “natural” medications were dangerous and 3) the only labs needed are the TSH and T4.

Equally a part of this B-grade horror movie is the three-stooges stand taken by the British Thyroid Association (BTA).

And UK-TPA thyroid patient advocate Sheila Turner began to go through her own hell when her Armour was taken away, which you can read about in the February 20th blog post here.

And suddenly, I get an email from Sheila, informing me that the RCP is as stupid as they were three months ago.

Sheila states: This is absolutely unbelievable that out of the hundreds of references we sent to the Royal College of Physicians to show their guideline to be flawed, they have taken no account of one single one of them. They are publishing their previous guidance without one since change. The world has gone mad.

Dear Sheila,

Further to my email of 6 April, the comments and materials received by the College have been reviewed. This position statement or guidance (not a guideline) was produced on behalf of the Royal College of Physicians, in particular its Patient and Carer Network and the Joint Specialty Committee for Endocrinology and Diabetes; the Association for Clinical Biochemistry; the Society for Endocrinology; the British Thyroid Association; the British Thyroid Foundation Patient Support Group and the British Society of Paediatric Endocrinology and Diabetes and is endorsed by The Royal College of General Practitioners.

The President has asked me to let you know that this review has not resulted in any changes to that statement.  It should be noted that it is about the treatment of primary hypothyroidism and does not preclude other treatments for exceptional cases by specialist endocrinologists who can make clear to patients any associated risks.

References supporting the statement are listed below.

Yours sincerely,

Catharine Perry
Administrator

•   Diagnosis and treatment of primary hypothyroidism. BMJ 2009;338:b725
•   Vaidya B, Pearce S. A Clinical Review of the management of hypothyroidism in adults. BMJ 2008;337:a801. This contains references for 35 articles and states that Armour thyroid is of no proved additional benefit to levothyroxine.
• The Lancet Volume 363, Issue 9411, Pages 793 – 803, 6 March 2004.  This covers the history, epidemiology, pathophysiology, and clinical diagnosis and management of hypothyroidism and is written by Caroline GP Roberts and Paul Ladenson of Johns Hopkins University School of Medicine, Baltimore, USA.  This review, which references 164 clinical articles, states that the treatment of choice for hypothyroidism is levothyroxine sodium (thyroxine) and does not refer to Armour thyroid.
•  Baloch Z, Carayon P, Conte-Devolx B, et al. Laboratory medicine practice guidelines. Laboratory support for the diagnosis and monitoring of thyroid disease.Thyroid 2003;13:3-126.
•  Association of Clinical Biochemists BTA, British Thyroid Foundation. UK Guidelines for the use of thyroid function tests. http://acb.org.uk/docs/tftguidelinefinal.pdf
•  Surks MI. Ortiz E, Daniels GH, et al. Subclinical thyroid disease: scientific review and guidelines for diagnosis and management. 2004;291:228-238.

And as your peruse the six references above which they use to defend their tunnel-visioned, moronic position, you realize that YOU, YOUR WORDS, AND YOUR POSITIVE-OUTCOME EXPERIENCE ON DESICCATED THYROID IS ABOUT AS IMPORTANT TO MOST PHYSICIANS & ORGANIZATIONS IN THE UK AS IS DIRT ON THE BOTTOM OF A RUSTED BUCKET IN THE MIDDLE OF A EMPTY FIELD IN NOWHERE. Yup.

Or as Harold Shipman stated about the RCP’s guidelines: What a brilliant wheeze.

*See below on the potential importance of potassium in your health and well-being. And on the May 7th post about the party being over with Forest Pharmaceuticals, comments continue to come in about experiences with the “new” Armour. Have you read the STTM book? Patients are stating they like it even better than this HUGE website. lol.

*Want to be informed of my blog posts? Curious what’s on my mind? Use the Notification on the lower left of the links.

If I need to add more info or corrections, please use the Contact Me form at the bottom of any page on Stop the Thyroid Madness.

THIS PATIENT REVOLUTION for a better hypothyroid treatment is working! Desiccated thyroid brands which were almost extinct from low use are now seeing a comeback. Another comeback?? PATIENT HEALTH!! T4-only meds do NOT work, unless an elevator which only goes to the 5th floor of a 50 story building….works. My quote; my words.

p.s. See the post below about the importance of your potassium levels, and below that, how being hypothyroid can affect your liver, and my opinion of that fact with T4 meds vs. desiccated thyroid, which one comment disagrees with.  For the May 7th post, comments are still coming in about the “New” Armour. Express yours, and let’s hope that just raising it will do the trick, in spite of the loss of being able to do it sublingually as easy as before–a sad loss.

*Want to be informed of my blog posts? Curious what’s on my mind? Use the Notifications on the bottom left of the links.

“I have been to at least 6 doctors over the past seven years and read thousands of websites, hunting for the cause of my severe muscle spasms”, explains Valerie. “They all ruled out potassium, a potentially likely cause,  because my serum lab result, 4.2, was right smack in the middle of the normal range.”

So Valerie was forced to live with her worsening muscle issues– spasms, weakness and pain–because all labs were normal and those that weren’t, didn’t pertain.  Even her insulin-dependent Type 2 Diabetes was well-controlled. And she knew it was all threatening to put her out of work as a pet groomer.  It was bleak.

But a surprising change was to come.

“About 2 months ago,” says Valerie, “someone on one of my groups mentioned potassium helping with fluid retention–the latter I’ve had for the last 15 years and took  Dyazide, a potassium sparing diuretic.”

She also learned about getting an RBC (red blood cell) potassium lab as it shows what’s inside the cells rather than in serum (as usual labs show).  And the results? It came back LOW.

Valerie has since worked her way up to 2850 mg. Potassium in a combo of chloride and gluconate…and below, in her own words, are the results:

• No more muscle spasms and the weakness and pain is leaving more daily!
• My IBS suddenly STOPPED!
• My insulin needs are HALF what they were before this supplement, and blood pressure & pulse are both down.
• ALL fluid retention is gone! I dropped 18 pounds the first month in just fluid weight.

Valerie is currently waiting for lab results to see if she needs to adjust further.

She concludes: I have since learned that being hypothyroid causes potassium losses, as does ANY steroid which I had been on for necessary adrenal support. Diabetes with a low carb diet also predisposes us to lose intracellular potassium into the serum which is probably why my serum labs looked normal in the face of extreme shortage. I hope many will see this and at the very least get RBC potassium labs done and if you have high BP or fluid retention, reach for potassium before a diuretic!

************************

Even without being inspired by Valerie’s discovery, there is good research out there for eating potassium rich foods, or like Valerie, using supplementation if your levels are low.  The LA Times reported a study which stated that consuming twice as much potassium as sodium might halve your risk of dying from cardiovascular disease,  stated by epidemiologist Paul Whelton, president and chief executive of the Loyola University Health System in Chicago and one of the authors of the study.

Here’s a list of potassium rich foods: http://www.hoptechno.com/bookfoodsourceK.htm

Here’s a list of symptoms of low potassium: http://www.buzzle.com/articles/signs-and-symptoms-of-low-potassium.html

And remember: ask your doctor to do an Red Blood Cell Potassium lab rather than simply serum. And don’t go as high as Valerie with supplementation unless you have proof of low potassium.

P.S. Magnesium helps pump sodium out of your cells, and potassium into the cells–a good reason to get magnesium tested as well.

*Want to be informed of my blog posts? Curious what’s on my mind? Use the Notifications to the left and below the links.

*What is your experience with the newly formulated Armour? Found a way to get around the problems? Express your opinion in the May 7th blog post!

I’ve been noticing several articles coming out the past week about a strong association between hypothyroidism and a twice the risk of liver disease and liver cancer, especially in females. And then it dawned on me: another strong reason to play basketball with your trashcan using your lousy Synthroid, Levoxyl, Levothroxine or Eltroxin bottles while being replaced with desiccated thyroid.

In other words, continued hypothyroidism (being on the lousy T4 meds) and undiagnosed hypothyroidism (because of the inadequacy of the TSH lab test) can potentially promote the development of nonalcoholic steatohepatitis, a more severe Fatty Liver disease. The next progression is liver cancer, aka hepatocellular carcinoma (HCC).

Even worse, the study revealed that women who had been hypothyroid for more than 10 years had a threefold higher risk of liver cancer compared to women without a history of thyroid disorders. This will make you pause when you consider how many reports there are of patients having hypothyroid symptoms for YEARS with a normal TSH…and a clueless, TSH-worshipping doctor.

And if reading this bores you, understand that your liver is a HIGHLY important gland that you can’t live without. It plays a key role in detoxifying the toxins you ingest and breath in daily (including smoking), besides being a major fat burner.  Make the liver diseased, and you become a breeding ground for toxins, the rise of other diseases…then death.

The solution? Run from TSH-kissing doctors, get on desiccated thyroid like Naturethroid et. al.  and avoid the most common mistakes of dosing while ceasing to smoke, curtailing the alcohol, and eating healthy (except for the daily dose of chocolate I gotta have. haha).

P.S. The original report came out in the May journal issue of Hepatology (published by John Wiley & Sons on behalf of the American Association for the Study of Liver Diseases).  Similar results were also reported in the Journal of Gastroenterology and Hepatology 2005.

Want to be informed about my blog posts? Curious what I’m ranting about? Just use the Notifications on the left at the bottom of the links.

See below about my disappointment in Forest Pharmaceuticals.

It’s promoted as safe, and it works by limiting the absorption of fats from what you eat, which in turn reduces your intake of calories.  (What has always turned me off about Alli or Orlistat is that is creates oily and loose stools. Bleck. )

Medscape just today reported about an FDA warning: the Use of orlistat may decrease L-thyroxine (T4) absorption and lead to hypothyroidism. Clinicians are advised to administer levothyroxine and orlistat at least 4 hours apart…

Oh jolly. So now we have the FDA giving a warning about Alli causing problems with “thyroxine” use,  yet it’s the VERY “thyroxine” use that causes a certain large percentage of those using Alli to need to use it in the first place. You can see that reality in the questions about the hypo problem on the Alli forum.  i.e They are all on thyroxine!

Hitting my head against the wall.

P.S. Reported in Endocrine Today and from just a month ago, and article titled Hypothyroid patients required increased levothyroxine during pregnancy.  Zombie Endocrinologists. Zombies. That’s like having an article titled Sick patients need more blood-letting. i.e LEVOTHYROXINE SUCKS AND SHOULD BE IN THE PAST just as much as blood-letting.  WAKE UP ENDOCRINOLOGISTS!! WAKE UP!!

*Check out patient response to the newly formulated Armour below, and add your own comments.